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This podcast focuses on puberty and sexuality issues in Down syndrome. We are joined by Terri Couwenhoven who is the worldwide expert in this topic.
Dr. Vellody: Hello everyone and welcome to the Down Syndrome Center of Western Pennsylvania podcast. I am your host, Dr. Kishore Vellody. Today, we are excited to have a visiting expert with us in the area of sexuality in Down syndrome. Terri Couwenhoven is a world-renowned expert in this field. I hope that we can address this frequently ignored topic and provide some guidance for family members and people with Down syndrome. Terri, I’m going to have you introduce yourself. Can you tell our audience a little bit about your background?
Ms. Couwenhoven: Well, my undergrad was in community health education. That training encompassed all areas of health, including sexual health. I got a pretty intensive training in college. After college, I was employed as a certified sex educator for many, many years and then became a director of education and training. During that time, I worked on a certification through AASECT. AASECT stands for American Association of Sex Educators, Counselors, and Therapists. It’s the only agency in our country that certifies people to work in the field of sexuality. It’s a pretty extensive training process. I was mentored quite a few years as well.
Dr. Vellody: And I know you’re a really busy person. Can you tell us a little bit about you do now?
Ms. Couwenhoven: I have 3 different jobs that I tend to do. If you count parenting as a job, I have 3. I run the Down Syndrome Clinic at Children’s Hospital of Wisconsin. When I’m not there, I have a business. It’s call TC services, and I’m a certified sex educator. My specialty, my emphasis, and my niche is just working exclusively with either people who have intellectual disabilities, their families, or the professionals who support them. That’s really who I am providing education for.
Dr. Vellody: Thank you for what you do and for joining us to share your knowledge with our audience. As you know, this podcast reaches families all over the world, and I know this information is needed. However, there may be other people listening to this podcast and wondering why this information is needed? Could you give us a bird’s eye view of this topic? Do we really need to know about sexuality in people with Down syndrome?
Ms. Couwenhoven: I find it interesting that in this generation we have really high expectations for our kids with Down syndrome. We expect them to be working in the community. We expect them to be living in the community. There’s post-secondary colleges popping up all over the place. Sexuality is a huge part of that. I mean, living in the community and understanding how to interact with people appropriately, what are appropriate boundaries, how to start a romantic relationship . . . those are all needs. People have the same needs and desires related to sexuality as the general population. For some reason, we don’t like to address that component of our kids. So, the answer to that is, absolutely, we need to be looking at sexuality.
One of the really important facts that we know about people with any kind of intellectual disability, including Down syndrome, is that they have way less information than the rest of the population. They struggle with understanding concepts. A lot of the things that our typical kids pick up automatically, sort of the concept of privacy for example, we have to teach all of those things. It becomes really important for social acceptance, fitting in, maximizing potential, having a quality of life.
Dr. Vellody: That’s a great overview of the importance of this topic. Why do you think we have such a tough time addressing it as parents or as medical care professionals?
Ms. Couwenhoven: Oh, that’s a hard question. A couple things come to mind though. One of is that I think we equate sexuality with sex. Or, we fear that if we allow people to be at all sexual in any way, it leads to sex which isn’t the case at all. I think in general, when we talk about typical people in the United States, we are not very comfortable with sexuality in general. If you compare the United States with other European countries, the attitudes are very, very different. Second, we’re not very comfortable with people with disabilities. We still have issues with “difference.” When you start combining sexuality and people with disabilities, that discomfort magnifies 10 fold. We just still as a country can’t wrap our heads around people with intellectual disabilities being sexual human beings. We still have issues with that. If we do, it’s infantilized. “Oh, isn’t that cute?” We treat it differently.
Dr. Vellody: That’s true, we do tend to have a harder time than we should discussing this issue with people who have Down syndrome. How should we approach this topic? Do you think that there is a different way in approaching this topic with a child with Down syndrome compared with a typically developing child? As you know, I even have a hard time discussing this with my typically developing kids!
Ms. Couwenhoven: I think it’s important for both populations, I’m going to say that. How we discuss it though and what we discuss might be a little different. With a typical child, we may want to talk about responsible sex and how to protect yourself. We don’t usually get there with people with Down syndrome because there’s so many other issues, basic issues, that we’re struggling with. How to greet somebody appropriately? How to handle their sexual feelings? The topics might be a little bit different.
Dr. Vellody: That makes sense. As a physician who specialized in working with children with Down syndrome, I find myself frequently telling families to be patient. I tell them how kids with Down syndrome just take a little longer than others to reach a lot of developmental milestones. However, as the older kids become adolescents, I frequently have families begging me to tell them the same thing about puberty? Is there any evidence for a delay in puberty onset?
Ms. Couwenhoven: Based on the information we have now, there are really no differences. We know that pubescence in the typical child is highly variable. It’s also highly variable in kids with Down syndrome. In general, they fit within that typical range of pubescence and when that begins. Just because our kids have developmental delays does not mean they’re going to be physically delayed. My favorite quote came from a parent who said to me, “I can’t believe this is the only thing she was right on time for!” So we need to be thinking about those things at around the same time we do with all of our kids.
Dr. Vellody: Ok, so families are going to have to prepare themselves for really no delay in the start of puberty! Are there any pearls or things you would suggest for a parent or caregiver who is noticing that its time to start the puberty discussion with their child? Are there suggestions of things that they might want to do differently?
Ms. Couwenhoven: A couple things. One, they need information just like the typical kids do. They need understandable information adapted and modified that makes sense for them. Two, they need more preparation. One of those best practice strategies that we know works for people with Down syndrome is the repetition and reinforcement over time. Even though we’re uncomfortable with the topic, we still need to talk about it and teach it a lot more than we’d like to. By preparation, I mean helping them understand what’s going to happen to their bodies. Usually we do that in connection with a teachable moment. Usually those teachable moments revolve around the kid noticing a change and showing you his pubic hair or her showing . . . that’s an indicator, that’s a teachable moment for us. That’s an opportunity for us to be going, “Oh look, yes, you’re getting pubic hair. You know what that means? You’re starting puberty. Do you remember what that is? You’re body is changing from a girl’s body to a woman’s body. That’s one of the things that’s going to happen. That’s one example of a teachable moment. We don’t have to sit them down at the table and go through every single change. Talking to them when things are happening and then adding on information over time. Preparing our kids for what they’re going to see, what changes they’re going to notice, what they’re going to feel (sexual feelings, moodiness), and maybe discussion of some of those inside changes that they’re not going to see but they might feel, the period piece. So preparation is really important, and part of that preparation is really good, understandable information usually in connection with a teachable moment that makes it heartier.
Along with the information, there’s something that I typically do for kids with intellectual disabilities that I think we forget about. We always have to couch it in social appropriateness and social rules and what’s appropriate. Your son or daughter is in the bathroom showing you their pubic hair, and they’re excited about that and you’re excited about it. Let me just say that parental attitudes about this stuff are way more important than anything else. How the parents approach the subject impacts their kids. When I have mom’s saying, “Oh, I don’t want to have to deal with this period stuff. I hated having periods.” All of those attitudes and approaches will affect how their daughters are thinking about periods or how their sons are thinking about their bodies. The parental attitudes become really important in this. When we’re sharing the information about the rules around helping them understand what’s private . . . “Yeah, you’re getting pubic hair. That’s really cool, but that’s just something you and I can talk about. If you have any questions on your body, talk to me not anybody else, just me.” Parents are sometimes afraid that their kids are going to be socially inappropriate once they give them information. We have to kind of couch it in social appropriateness and boundaries around our bodies, around who we talk to, what’s going on …
Dr. Vellody: So parents have to really make sure the kids get the right information and in the right way. Let me ask you for a specific example from a question I get frequently in clinic. Do you have any advice about how parents can prepare the girls for menstruation. We have a lot of families who worry about how their child will be able to handle their monthly cycles.
Ms. Couwenhoven: My experience is that with good preparation . . . when we’re talking about menstruation, couching it with all of the other changes that are happening to their body helps them understand the context of “yes, my body is changing from a girl’s body to a woman’s body. One of those changes is the period. As we’re adding on information, we can be talking about this thing called a period very early on. Always, visuals are important. That’s why I wrote the puberty books for the kids. So they don’t have to be afraid. They don’t have to be anxious. I want them to know this happens to all kids. This is normal, healthy, and happens to all kids. When we talk about periods, one of the way I frame that is “this is one of those things that’s happening as your body is changing from a girl’s body to a woman’s body.” Then explain what a period is. “A period is when blood comes out of your body between your legs.” You don’t have to go through “the egg comes out of the ovary and goes down the fallopian tube.” Just make it simple and unsophisticated. The important piece of that is “when you get a period, when you notice blood, you have to get a pad.” The preparation in how you use a pad, perhaps the girls watch the mom change a pad. There’s movies on the internet that help girls with that. It’s why I wrote my book. There’s a visual task analysis in the book. Really desensitizing them to that whole idea of blood coming out of the body . . . normal, healthy. With advanced preparation, they do fine. Again, it’s us. It’s the adults that have more of the issue and concern than the kids do. Really be careful about not translating that fear and anxiety right onto your kid.
Dr. Vellody: I know that information will be helpful for a lot of our families with girls. Of course, puberty comes with it’s own challenges for boys. Can you very briefly just tell us what boys need to be prepared for?
Ms. Couwenhoven: As for boys and preparation for boys, there is no excuse for them not to know about wet dreams, about masturbation, about all of those things that are going to be normal and healthy and happening to their bodies as well.
Dr. Vellody: Thanks, it seems like a common theme for both girls and boys. Preparation and letting them know what is normal and expected is key. Now, Terri, I’m feeling like this is a good point for us to break in this topic and give our listeners some time to process this information. Thanks for joining us today. Would you be willing to join us for another podcast soon?
Ms. Couwenhoven: My pleasure.
Dr. Vellody: Great, thanks! To our listeners, please visit Terri’s website which is www.terricouwenhoven.com for more information. You can find her books on Amazon.com by searching for her name in the search field. Terri, we’ll look forward to finding out more about this very important topic in our next podcast. Until then, bye bye!
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